'DiSumma Strong' dad awaits heart transplant

The family of North Scituate resident Steve DiSumma, a man born with a rare and dangerous heart defect, often refer to that fact with pride and, more importantly, with a great deal of hope.

The family name, they say, signifies Steve's extraordinary inner strength that keeps him alive as he awaits a heart transplant, no matter how many months must pass before a donation takes place.

He is in a Boston hospital with a plastic artificial heart, hooked up to a machine that helps circulate his blood. He could very well be there for months.

"I call him 'my superman,'" says his wife, Jennifer (Chabot) DiSumma. "He is strong, DiSumma strong ... He can make it through this. He is one tough Italian."

Gianna, his 10-year-old daughter, is well aware of her father's plight and the way to resolve it. She speaks of how "bittersweet" it will be when a donor is identified because it will mean someone else has to die. "It's not the donor's time yet," the little girl said.

She says she just wants her dad to get better.

Rare heart defect

Steve, 44, was born with a rare congenital birth defect known as transposition of the great arteries (TGA), which means his aorta and pulmonary artery were transposed so his heart was reversed. The condition results in a shortage of oxygen in the blood flowing to the rest of the body.

The cause is unknown and, as for a cure, most cases nowadays are detected at birth and then corrected immediately with surgery. Only five out of every 10,000 babies born in the United States every year are affected, according to the national Centers for Disease Control and Prevention in Atlanta, Ga. (www.cdc.gov). When Steve was born 44 years ago, little was known about the disease

Much has changed since then in the field of medicine. Steve is a patient at the Carl J. and Ruth Shapiro Cardiovascular Center at Brigham and Women's Hospital in Boston, where he underwent open-heart surgery July 5, conducted by Dr. Gregory Couper.

"He gets better every day," says Jen, who goes to see him just about every day in spite of her full-time employment. She has worked 14 years as a logistics planning analyst and supervisor at the CVS Corporation headquarters in Woonsocket. She says she is thankful that CVS has been "so supportive."

At the July 5 surgery, when Steve's own heart was failing, an artificial heart was implanted in his chest cavity, only the fifth operation of its kind at Brigham and Women's, according to the family. The fake heart is made of a plastic-type material, comes in two parts and is "the size of your two fists," says John DiSumma Jr., Steve's nephew, showing a picture of the device.

Because TGA lowers oxygen in the blood, Steve is hooked up to a machine that his family called a "companion driver," with two large tubes going into his body, to keep his blood flowing naturally.

To show what the device looks like, the family has a video of an episode on the daytime television show "The Doctors," which features a California man with an artificial heart hooked up to a similar machine. The device fits inside a backpack, weighs about 14 pounds and, coming clearly through the TV speakers, you can hear the repetitive swishing-swooshing pump of the machine as it works, with the same rhythm but a lot louder than a normal heart beat.

"It is amazing to think that this machine is keeping him alive," says Jen. Her brother-in-law, John DiSumma Sr., Steve's older brother, goes one step further in his assessment. Brigham and Women's "is number one in the world" for the treatment of heart disease, he says, and "if it weren't for them, my brother wouldn't be alive today." Indeed, according to the family, it was the doctors in Providence who recommended Steve go to Brigham and Women's for treatment they could not provide in Rhode Island.

'He worked two jobs'

In late July, the DiSumma family is gathered around the dining room table at the Cranston home of John DiSumma Jr., Steve's nephew, and his wife, Stephanie, to announce a fundraiser John Jr. is planning for his uncle in September to help pay medical expenses. John Jr., a teacher in North Providence elementary schools, is more like a brother to Steve than a nephew, he says.

His voice shakes with suppressed emotion as he describes how hard his uncle Steve has worked all of his life.

"Even with a bad heart, he worked two jobs," John Jr. says, "he worked third shift, he took care of his mother, he made sure food was on the table and the bills were paid. He doesn't deserve this."

Steve DiSumma is a graduate of Johnston High School and holds a degree from Johnson & Wales University in Providence, where he received training as a paralegal although he has not pursued that profession. Until his latest bout of illness, he worked for Dave's Marketplace as produce manager at various Dave's stores for six years, previously working at BJ's Wholesale Club in Johnston. "He's a huge Dallas Cowboys fan," said John Jr., and he and his uncle traveled to Dallas last year to see the team play.

The trip came during a time when Steve was feeling well, times that have become increasingly rare as he has grown older. His first open-heart surgery came when he was just 4 years old. He was not allowed much physical activity as he grew up until, at 21, a second open-heart surgery paved the way for many healthy years when he went to college, married, fathered a daughter and worked every day.

After suffering congestive heart failure and other ailments, his third open-heart surgery came in February 2012 when surgeons at Brigham and Women's inserted a pacemaker and repaired two leaking heart valves. "The surgery was a success, or so we thought," Jen said. "Life seemed to go back to normal."

Such normalcy lasted no more than five months. By July 2012, his heart function was less than 20 percent, Jen said, and doctors said he would need an artificial heart as a bridge to a full heart transplant. Doctors told her he would "have to remain in the hospital for approximately a year since that was the average waiting time for a donor," Jen recounted.

This uncertainty persists today. How long will Steve be in the hospital? "It could be a year, it could be eight months, it could be 10 months," Jen told the Valley Breeze & Observer. "It all depends when a heart that matches becomes available."

Comedy fundraiser

Although Steve is covered by Medicare and Jen has health insurance, the procedures that Steve is undergoing, as well as his extensive hospital stay, are expensive and "some expenses won't be covered," Jen says.

"They gave me a list of the medications he must be on, seven or eight of them. One of them costs $7,000 and, even with my prescription coverage, it still will cost $380, just for a month's supply."

Thus, the need for a fundraiser. Titled "DiSumma Strong," the event is scheduled for Saturday, Sept. 21, at PJ's Pub, 198 Putnam Pike (Route 44), Johnston, with host Nick Albanese, featuring comedians Frank Gentile and Mike Hanley. Raffles and other fun events are on tap, said John Jr.

Steve is the son of the late Angelo DiSumma and of Bessie DiSumma, a resident of a Greenville nursing home. Jen is the daughter of Lee and Chris Chabot, of Glocester, artists and owners of Chabot Gallery on Atwells Avenue, Federal Hill, Providence.

John DiSumma Jr. is a health and physical education teacher at the Whelan and McGuire elementary schools in North Providence.